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Parents of sick infant Charlie Gard storm out of U.K. court hearing

Connie Yates, mother of Charlie Gard, accused a High Court judge of misquoting her statements about her son's quality of life.

The parents of Charlie Gard have been arguing that treatment in the U.S. is in the best interest of their son, who suffers from a rare genetic condition. (Jonathan Brady / The Associated Press)

By Caroline SpiezioThe Associated Press

Thu., July 13, 2017

LONDON—The parents of a baby with a rare disease stormed out of a London court hearing in an emotional outburst Thursday, as the couple tried to convince a judge to let them take their critically ill child to the United States for medical treatment.

Charlie Gard’s parents are challenging the view of Britain’s most famous children’s hospital, arguing that treatment abroad is in the best interest of the 11-month-old suffering from a rare genetic condition.

A succession of judges has backed specialists at Great Ormond Street Hospital, who argue experimental treatment in the U.S. won’t help and may cause suffering for Charlie. The parents hoped to present fresh evidence to alter that view.

Two hours into the High Court hearing, questions from Judge Nicholas Francis prompted tensions to boil over. Charlie’s mother, Connie Yates, accused Francis of misquoting her earlier statements about Charlie’s quality of life.

“We said he’s not suffering and not in pain,” Yates yelled. “If he was, we wouldn’t be up here fighting.” Chris Gard then slammed his water cup down and the couple left the courtroom.

Charlie suffers from mitochondrial depletion syndrome, a rare genetic disease that has left him brain damaged and unable to breathe unaided. The hospital says there is no known cure and believes his life-support systems should be turned off.

The parents want to try — but it isn’t up to them.

British judges are tasked to intervene when families and doctors disagree on the treatment of people unable to speak for themselves. The rights of the child take primacy, with the courts weighing issues such as whether a child is suffering and how much benefit a proposed treatment might produce.

“Unlike the U.S.A., English law is focused on the protection of children’s rights,” said Jonathan Montgomery, a professor of health care law at University College London. “The U.S.A. is the only country in the world that is not party to the U.N. Convention on the Rights of the Child; it does not recognize that children have rights independent of their parents.”

Montgomery said that while it was right to consider the views of Charlie’s parents, the court will not make a determination on this basis.

“This case is about Charlie’s rights and what the evidence tells us that they require,” he said. “That will be the only consideration of the judge at the hearing.”

Francis, who ruled in favour of doctors in April, says he will consider any new evidence. The courtroom was packed as Francis heard arguments on differences of medical opinion.

“We are continuing to spend every moment, working around the clock to save our dear baby Charlie,” the couple said in a statement before the hearing. “We’ve been requesting this specialized treatment since November, and never asked the hospital, courts or anyone for anything — except for the permission to go.”

Britain’s Supreme Court has ruled it’s in the boy’s best interests to be allowed to die with dignity. The European Court of Human Rights rejected an appeal from the parents, which briefly stalled their legal options.

But days afterward, U.S. President Donald Trump and Pope Francis gave the parents new hope by shining an international spotlight on the ethical debate.

Pope Francis issued a statement insisting on the need to respect the wishes of the parents to “accompany and treat” their son to the very end.

Americans United for Life and other groups have seized upon the case, arguing the infant needs a “chance at life.” Petitions have circulated to offer support and others have arrived at Charlie’s bedside to pray.

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